autism · crafts & knitting

red lolly, green lolly

 

Shawl

 

Well the school half-term break has been and gone and we were getting back into term time routines when Toby came down with a vomiting bug. Poor Toby has had more than his fair share of illness this winter, perhaps his system has been weakened by the growth spurt he’s been going through – it seems that he’s visibly grown every morning when he gets out of bed and he’s not far off H in height now. Happily he’s over the bug and back at school now, a little thinner and a little taller and still with his poor old callouses from the hand biting that remains a too frequent part of his days.

 

Tobys hands

 

Over the half term break we spent some time trying to expand Toby’s P.E.C.s vocabulary by starting on descriptive symbols. Motivation is the key to P.E.C.s (which is why teaching it often fails in schools here, as they refuse to use food items as request-able and why on earth would any child want to jump through hoops to request a red cup or a green sock?) Luckily at home we don’t have those restrictions and I use Toby’s favourite foods all the time to re-enforce his use of P.E.C.s vocabulary and to motivate him to be more communicative with us. Recently he’s discovered a love of twister ice-lollies. These come in a pack of half red-with-green-middle and half green-with-red-middle and for some reason Toby doesn’t like the ones with the red outside. So when he’s brought the ‘I want lolly’ request to me I’ve been making him choose which colour.

 

Lollies

 

It’s working really well and he’s now independently adding the green symbol to the lolly on his request strip. So green lollies is all he gets and I have a freezer filling up with red ones because although Amy likes them she’s out so much of the time and she can’t match Toby’s lolly eating pace!

True to form I didn’t see much of Amy over the half term break – apart from at mealtimes (when she miraculously appears, eats and disappears back to her room again in stereotypical teenager fashion) or in the car (when I’m driving her to or from somewhere – friends house, music gigs, shops etc.). I’m trying to give her the space she so obviously needs at this point in her life but it is hard not knowing her so well anymore and I worry about her safety. I can only hope that all we’ve taught her so far about the world is enough to keep her safe as she forges her independence.

In the rare half-term moments that I wasn’t being mum, I worked on a new shawl – a long crescent shape one which I hope I’ll find easier to wear than the triangular ones I’ve previously made. That’s it in the picture at the top of the post, it’s from a pattern called ‘Crescendo’ by Janina Kallio – the yarn and pattern details are on my ravelry project page. Of course I know that knitting directly from an unravelling piece of knitting that didn’t work out is a cardinal knitting sin and one I’ll probably regret (as the yarn is still crinkly it will not knit up as evenly and I should have unwound it, soaked it, dried it and wound it into a ball before using it) but I was feeling lazy and I hope that during blocking the finished shawl will forgive me and turn out well!

 

Almond cake

 

I’ve also baked; our new favourite cake is Nigella’s easy almond cake which has marzipan melted within it and is deliciously almond scented and moist. I make 1/3rd of the recipe quantity and bake in a half pound loaf tin – the perfect quantity for a small cake as it’s mostly me that eats it, especially for breakfast with a strong cup of tea.

 

Woody

 

More birds have been coming into our garden thanks to the feeders and seed that my Mum and Dad gave me at Christmas. I love watching them flit between the feeders and the plum tree and recently we’ve had goldfinches, blue tits, great tits, long tailed tits, chaffinches, sparrows, dunnocks, blackbirds and a couple of lesser spotted woodpeckers.

 

Narciss2

 

Lastly I’ve enjoyed the blooming of the little pot of narcissi that I brought home from my friend’s funeral, a small and delicate reminder that beauty doesn’t often last and though some people may not be here as long as they should, they can remain and be treasured in the memories we have of them.

 

autism · general stuff

cranking up the rollercoaster ride

 

Narcis

 

Having an autistic child in the family means that life is never predictable but this last week has thrown us a few extra loop-the-loops in roller-coaster ride.

Monday:

On Monday I had a call from school to say that Toby had managed to peel an adhesive drug patch off of another pupil and had chewed it. The drug patch is designed to deliver a slow steady dose through the skin over a 72 hour period and is not intended to be ingested and as Toby had given it a good chew for a few minutes or more he'd obviously swallowed most of the drug. The school nurse suggested I call our GP for advice so I phoned the GP but the receptionist could only take a message and suggested I call 111. NHS 111 wouldn't give me advice as Toby wasn't with me so I called the school nurse back to explain that I could get no advice. By this time Toby had started to have a reaction to the drug and one of his pupils had fully dilated. The school nurse then decided to call the National Poisons Information Service at Guy's hospital who were able to confirm that based on Toby's weight and the dosage of the patch he had not consumed a toxic dose but that it would be good to take him to hospital as a precaution.

Hospital for an autistic child is a deeply stressful, unpredictable and frightening place, especially for Toby who has had a bad experience. When he was six I took him to A&E as I was worried about a non-blanching rash he'd developed after a high fever and throwing up. It turns out that he'd just burst a load of capillaries from vomiting violently but at the time I was worried about meningitis. Despite thinking that he did not have meningitis the pediatrician insisted on taking blood to run cultures on but it took 4 adults to hold Toby down in order to do this. They pinned each of his limbs and he screamed until his tongue turned blue and I was crying and begging them to stop and it was the most stressful and frightening experience of my life. I vowed at that moment that I would never again take him unless I was sure that he was in danger and so (based on the information from Guys hospital about the non-toxicity of the dose) I brought him home, gave him plenty to drink and watched him like a hawk. By evening his pupil had started to shrink and he was calm and behaving normally but even so I decided to sleep with him so I could watch him all night. Having read up on the drug since I've found that even a small dose can have serious side effects (although rare) including hallucinations, heart problems and anaphylactic shock, so we were lucky that Toby only had a mild reaction.

 

Tuesday:

By Tuesday morning his pupil was normal, as was his behaviour, so I sent him in to school. The day was a hugely emotional one for me as I attended the funeral of a fellow mum who I first met when Amy and her son were in the same class at nursery. Her second son is the same age as Toby and she and the boys came to tea a few times when the children were younger. Around 7 years ago (a year or so after the birth of her daughter) she was diagnosed with breast cancer but she had successful treatment and, being who she was, took everything in her stride and carried on with devoting herself to raising her family. But last year the cancer returned with a vengeance and she eventually lost her battle with it in late January.

I've not been to many funerals and those I have were for elderly relatives who had lived full and long lives. To attend the funeral of a friend of your own age, with three young children makes you take stock of your own life, re-assess your priorities and remind yourself to appreciate all that is really important in life. The service had a very large attendance, outside of her family and closet friends there were many, many mums who had got to know her through the many different aspects of school life that she involved herself in. We each took a flower to lay on her coffin as we filed out after the service and it was very moving to see all of these individual blooms and sprigs representing the love and friendship that everyone felt for her. The wake was full of chatter and laughter as we sat and shared memories of how she touched our lives while a screen on the wall flashed up a stream of pictures of her from childhood to parenthood. As we left we were each given a pot of narcissi to plant in our own gardens (she loved gardening and had created the most beautiful space for her family).

 

Wednesday and Thursday:

I spent Wednesday quietly, thinking lots and doing a little knitting.

When Toby arrived home from school I could tell at once that he wasn't well. He was huffing and puffing and looked pale but flushed at the same time. The thermometer confirmed that he had a temperature of 102 and I got him into his jammies, dosed him up with calpol and settled him in the sofa bed. As is usual with Toby his temperature spiked at around 103 and he had shivers which always make him giggle! I spent the night with him again (as I always do when he's unwell) and on Thursday we watched Cbeebies and had a quiet day together. By Thursday lunch time to fever had gone and he was hungry. He was increasingly active throughout the rest of the day and ate a big dinner. So it seems like he just had one of usual 24 hour bugs.

Friday:

After a goodish-for-Toby nights sleep I sent him in to school but ended up wishing I hadn't as he chewed a drug patch again! I'd hoped that some lessons would have been learnt in school and measures put in place to ensure that the same thing couldn't happen in future, so it's deeply worrying that he was able to do it again. At least this time he'd only had it in his mouth for a few seconds and he didn't seem to have a reaction.

 

Narciss

 

I'm pondering what to make of such a week and I can't help feeling like there is something necessary for me to learn from these out-of-the-ordinary experiences. For the last few weeks I feel I've been chasing my tail, trying to keep on top of a growing list of undones and tearing around trying to cram too much in. I've often been feeling hassled, frazzled and a bit grumpy. So maybe it's all about embracing the thoughts that came to me after my friend's funeral – value each day and be thankful for what you have, right here and right now.

 

autism · general stuff · in the woods

woodland wonderland

Fairytale

 

Moss2

 

Mosses

 

Moss

Mossroots

 

Drip

 

Fungus2

 

Fungi

 

Leaves

 

Leaf

 

Crabapple

 

Lichens

 

Seedhead

 

Bench2 (2)

 

Pic nic

 

The last couple of weeks have been a bit tough for Toby. He's been having many more meltdowns, lots of anxiety and has been much more wakeful at night than his usual hour or two. The hardest thing is not knowing what the cause of this latest 'spell' might be – he has never developed speech and his communication via PECs is limited to him requesting items and activities so there is no way for us to explore what he might be feeling. He has been under the weather health-wise and there have been some changes in school but we're really left to guess work, trial and error and a general feeling of despair at not being able to help him work through it.

Lack of sleep does funny things to your mind (which is probably why it is employed as an effective interrogation technique) and I find I'm a lot more prone to feeling down when we're in these cycles with Toby. Knitting always helps of course but last week I felt the need to be out in the fresh air. The woods in autumn are a beautiful place to be and I do find them spiritually refreshing. I spent a very peaceful couple of hours wandering around alone with a complete absence of human noise and human demands. I saw lots of grey squirrels busy with their winter store, two muntjac deer and a multitude of different birds all too quick for my camera but I did enjoy taking pictures of the plant life.

All the mosses and fungi are particularly abundant at the moment since it's been such a mild and damp autumn. It felt good to be alone in the woods, looking at the tiny small worlds that go on mostly unobserved and it definitely helps me get some perspective back when things are hard going. I count myself very lucky to have such a beautiful place on our doorstep and I'm getting to know its secret places well. Modern existence often separates us from nature but it's to our detriment and I plan to keep heading wood-wards when things get a bit tough here.